Tuesday, August 21, 2012

Understanding Life with an Allergy

I would like to preface this post by explaining my purpose in writing it. I am not seeking to solicite pity. Rather, my hope in writing this is that others would be educated and encouraged in order to better understand what life looks like with an allergy and how to come along side individuals who have allergies and offer empathy and support.

Our oldest son Myles is a smiling, intelligent, sensitive, energetic 5 year old. He loves to read. He is obsessed with superheros, and he has a life threatening peanut allergy.

When I say that my child has a life threatening allergy I mean just that. If he ingests peanuts he could die. It is not merely a matter of peanuts giving him a tummy ache or itchy skin. If he is exposed to peanuts, his throat could swell, he could stop breathing and potentially die. Now I know this sounds extreme, but this is the reality of what our family and many others like us live with everyday.

I am a rule follower. I always have been. So when I was told not to give my child nuts until he was two, that was exactly what I did. After his two year well child visit, having gained permission from the doctor to allow Myles to try peanuts, I happily let him taste his first bite of peanut butter. I quickly noticed a rash and hives growing on his face, but having just received his vaccinations earlier in the day I assumed that was the cause of the reaction.

Several weeks later I tried to give him peanut butter again. This time the reaction was more severe and included facial swelling. At this point there was no denying that there was something wrong. We began the process of diagnosis and treatment.

Learning that my baby had a life threatening allergy turned my world upside down. We quickly became experts in how to keep our son safe. His environments had to become completely peanut free. We obviously had to eliminate peanuts from our diets, but it wasn't as simple as no longer buying peanut butter. Myles can not have anything that has been processed with peanuts or could contain traces of peanuts. So we instantly became label police.

Going to the grocery store means reading every label, every time. Products quickly change without warning. What might have been "Myles Safe" last week may no longer be safe this week because the company changed where their product is processed.

Recently, I found a little bakery that is completely Myles safe. When we walked up to the counter, I told Myles that he could order anything that he wanted. His whole face lit up. He could order anything that he wanted! My mommy heart sang and cried at the same time.

Life for a child with an allergy looks very different than that of a typical childhood. Whenever there is a treat at school, Myles has something different. When we go to a restaurant, the wait staff has to check every item that he wants to eat to make sure that it is safe before he can order. When he is invited to a birthday party, it entails a conversation with the birthday child's parents to make arrangements either to have a Myles friendly menu or to have me send his own food. The first time Myles was able to go out for ice cream was when he was almost 4 years old. Most ice cream parlors are laden with the danger of cross contamination and are therefore off limits. We were on vacation with Eric's family in Duluth when we found a place that Myles could safely order an ice cream sundae. As the waitress brought out the sundae the look of sheer joy on Myles' face brought all of us to tears.

We have been incredibly blessed with supportive family and friends. The preschool that Myles has attended for the past two years has been amazing. They have embraced us, peanut allergy and all, with open arms. Allowing me to educate and equip them to create a safe place for Myles to learn and play. Now as we prepare for Myles to begin attending a new school in the fall (that does not have his Nana as the director) I find myself fighting very hard to keep the strong tentacles of anxiety from wrapping around my heart and mind paralyzing me with their grip.

How will this new school approach Myles' allergy? Will they take it seriously? Will they help him feel comfortable? Will they treat him as though he were their own child? Will the other families accept Myles and respect him with the food that they send to school? These and many other thoughts plague my mind as the start of schools creeps closer.

Many of us are preparing for our children to go back to school in the coming days and weeks. Most of you will encounter someone whether it be in your child's school, soccer team or Sunday school class that has some sort of allergy. And in so you are given the opportunity to help another family in a truly profound way.

Here are some ideas of ways that you can support families with an allergy.

1. Ask lots of questions
It means so much to me when people take the time to talk with me about Myles' allergy. I understand that reading labels and preparing foods for someone with an allergy is not something that most people do on a regular basis. So, of course they are going to feel apprehensive about it.

Don't feel silly asking the child's parents if something is safe for their child. I would much prefer that you ask, rather than just assume that something is probably safe. I can't even put into words how touched I have been when classmates parents have brought in labels for me to look at and double check.

Knowing that someone values my child enough to take a moment and ask about his safety means the world to me. It also helps me to feel less alone in what can sometimes be a lonely journey.

2. Be willing to put up with some inconveniences
I understand that there are inconveniences associated with having a child with an allergy in your child's school. Trust me, I know. But please pour out an extra measure of grace and understand that what is an inconvenience to you is helping to save a child's life. Does using soy butter instead of peanut butter in your child's lunch stink? Absolutely. Does reading the labels of the food you send to school take a few extra minutes. Yes it does. But those sacrifices ensure that my child and others like him can safely go to school and learn and play like a normal child.

3. Know that the families of children with an allergy are not trying to be overbearing in their attempts to create a safe environment for their child.
Imagine that your child will be getting a ride from a friend. As a parent you think through the scenario, OK I need to send the car seat, show them how to install and use it etc. When the driver arrives you tell them that you will explain to them how to use the car seat.

Now imagine how absurd it would be if that driver said, "Well, my child is big enough to not use a car seat and it will be inconvenient for me to take the time to put in your child's car seat and buckle them in it. I'm just not going to use the car seat."

Sounds ridiculous right? We wouldn't think that a parent was being overbearing by insisting that the driver use the car seat. No, in fact we would think that they were negligent if the did not insist on the car seat being used. I believe the same is true of parents of a child with an allergy insisting on making her child's environment as safe as possible.

Ultimately, I have realized that each situation we encounter in life is a purposeful orchestration of our Creator. He is using Myles' allergy to teach me to trust Him more and more. He is also showing me places that I need to extend more grace to those around me, for I am often unaware of what their world truly looks like. So today, take a moment and consider what it is that you might learn and use to make your world look just a little more like God's kingdom on earth.

5 comments:

Well written, Anne, and so informative. I can see that you must always be on your toes to be sure that Myles is safe, and in the spirit of "It takes a village to raise a child.", we should all be looking out for one another.

Love this post. Was sent to this website by a friend who thought our son's may be in the same class next year (guess we'll find out Tuesday!). My best friend has gone through this same situation with her oldest son and has given me quite an education along the way. Know that if our son's are in the same class you'll have my full support :)

Thank you so much! I am so glad that you visited my blog. Your friend is very fortunate to have you in her life. The support of friends & family is priceless to a family with an allergy. We are looking forward to Tuesaday. I hope to meet you there!

Ooh, Anne, your "Unknown" is my friend, also named Elizabeth. I hope Myles and her Andrew are in the same class. I know you guys will get along very well. It was so great seeing you at Meijer the other day. Joshie was the one who whispered to me that you were in line behind us. "There's Myles' mom," he said. I'll sure miss seeing you all the time at Cherry Lane (and your mom, too).